Baby Charlie Gard's Parents and Doctors Haggle over Details of His Final Days
On Monday, July 24, the parents of terminally ill 11-month old British baby Charlie Gard agreed with his doctors to end life support and allow him to die. It was assumed that the court proceeding in London where this decision was announced would be the final occasion requiring the parents’ presence in court, allowing them to focus now on being with their son until the end. As it turned out, Connie Yates, Charlie’s mother, felt the need to return to the same court on Tuesday and Wednesday and appeal to the same judge for help.
In court on Monday, all of the interested parties – the parents, the hospital, the attorneys, and the judge – seemed to be trying hard to sound a note of unity. Before the next day, this feel-good front had dissolved when the hospital and the doctors refused to honor the parents’ wishes to allow Charlie to die at home. This request does not seem unreasonable considering the fact that Charlie has spent all but the first two months of his short life in hospital. High Court Judge Nicholas Francis sided with the hospital on that issue, but it was back to court again on Wednesday for another appeal by Connie Yates, this time to allow the parents the choice of the hospice staff to oversee Charlie’s final days and the length of time that he might be kept alive in hospice with the help of life support. The parents want Charlie to be on a respirator for at least several days after he leaves the hospital to allow them a decent length of time in a supportive environment to say goodbye.
Crying uncontrollably and shielding her face from photographers, Connie Yates leaves the British High Court, July 26, 2017
After the latest court hearing, the AP reported Wednesday afternoon from London:
Yates requested a medical team of her choosing that would work to keep her son alive for a week under hospice care rather than the few hours he was expected to survive once his ventilator was removed.
The request indicated that the parents have backed away from their earlier expressed wish to take Charlie home for “a few days of tranquility” before his ventilator was disconnected and he was allowed to “slip away.”
Wherever Charlie winds up spending his last days, nurses from the hospital have volunteered to care for him in his final hours.
Mr. Justice Francis said the situation calls out “for mediation” rather than a court ruling, but he said he would rule on the details of Charlie’s future on Thursday at noon PST (British Summer Time) if the parties could not agree.
Less than five hours before the scheduled Thursday noon deadline, the Daily Mail published an article summarizing the latest information.
Great Ormond Street doctors said it was not practical to provide life-support treatment to Charlie at the couple’s home for days. They said a hospice would be a better plan, and they said life-support treatment should end shortly after Charlie arrived at a hospice.
Charlie Gard with his parents at Great Ormond Street Hospital
Dr. Hirano Speaks
On July 15, it was revealed that Michio Hirano, M.D., a specialist in neurological disorders including the very rare condition that Charlie Gard has, was the expert who had been confidentially weighing in on Charlie’s case since earlier this year. Dr. Hirano, 56, is involved in innovative research and clinical practice at Columbia University Medical Center in New York and has a list of positions, accomplishments, publications, and research grants that have resulted in significant international recognition.
After the court hearing on Monday, July 24, during which it was agreed that life support for Charlie would come to an end and treatment of Charlie in New York by Dr. Hirano would not be attempted, Dr. Hirano suddenly became an apparent scapegoat and a target of the hospital, the judge, and much of the media. Overnight, this previous miracle worker (who had saved the life of another young patient afflicted with the condition that Charlie Gard has) became a “quack,” “wicked,” and a pariah who was only in it for the financial rewards, with allegations that he stood to profit from the therapies he was experimenting with and was prepared to use on Charlie.
Michio Hirano, M.D.
On Tuesday, Dr. Hirano finally spoke out in the form of a statement – the first time he has said anything on the record (other than in court) about this case and its aftermath.
In a July 26 article, “US doctor Michio Hirano who flew to London to examine Charlie Gard after offering experimental treatment hits back at ‘financial interest’ claims,” The Sun does a credible job of summarizing the case in light of Dr. Hirano’s new input.
In his first public statement since their decision, Dr Hirano hit back at reports he would have benefited financially from the therapies.
He said: “I became involved in Charlie’s case when I was contacted by his parents, and I subsequently agreed to speak with his doctors to discuss whether an experimental therapy being developed in my lab could provide meaningful clinical improvement in Charlie’s condition.
“As I disclosed in court on July 13, I have relinquished and have no financial interest in the treatment being developed for Charlie’s condition.”
In this first out of court public statement on the case itself, Dr. Hirano, according to The Sun, went on to say:
“Unfortunately, a [sic] MRI scan of Charlie’s muscle tissue conducted in the past week has revealed that it is very unlikely that he would benefit from this treatment.”
The statement “on GOSH patient Charlie Gard” released by the Great Ormond Street Hospital (GOSH) on July 24 took on Dr. Hirano:
GOSH was concerned to hear the Professor state, for the first time [on July 13], whilst in the witness box, that he retains a financial interest in some of the NBT compounds he proposed prescribing for Charlie.
For what it’s worth, Dr. Hirano, according to The Sun, stated that he disclosed to the court on July 13 that he “relinquished and have no financial interest in the treatment.” It is probably water under the bridge at this point, but it would be helpful in setting the record straight if the court record could be consulted by someone with access to it to determine who is telling the truth here.
Before Dr. Hirano’s name was revealed, I thought that whoever it was – at that point an unnamed foreign expert who was getting involved in the Charlie Gard case –would wind up being a victim of unwarranted attacks for his efforts and would have his reputation besmirched. And so it was.
The sudden negative publicity directed at Dr. Hirano starting on July 24 suggests that other hospitals in London that declined to provide care for Charlie Gard at the request of his parents feared the same thing. For example, on July 11 it was reported in The Telegraph that “Hospitals refuse to take Charlie Gard as relations between his parents and Great Ormond Street plummet:”
Relations between Charlie Gard’s parents and Great Ormond Street deteriorated to such an extent that attempts were made to move the baby – but no other hospital would have him.
A lawyer said discussions had taken place with other units to care for Charlie but “unsurprisingly” none wanted him.
The latest word from Charlie’s parents – for now
Chris Gard and Connie Yates with Charlie in his hospital room
Finally, in the wake of the blizzard of legal briefs and statements issued by different players during and after the July 24 court hearing, the most complete, informative, and compelling one is the statement by Charlie’s parents Connie Yates and Chris Gard, read to the court from the witness stand on July 24 by Connie:
Put simply, this is about a sweet, gorgeous, innocent little boy who was born with a rare disease, who had a real, genuine chance at life and a family who love him so very dearly and that's why we fought so hard for him.
We are truly devastated to say that following the most recent MRI scan of Charlie's muscles, as requested in the recent MDT meeting by Dr Hirano; as Charlie's devoted and loving parents we have decided that it's no longer in Charlie's best interests to pursue treatment and we will let our son go and be with the angels.
The American and Italian team were still willing to treat Charlie after seeing both his recent brain MRI and EEG performed last week. He's not brain dead (and never has been). He still responds to us, even now, but after reviewing the recent muscle MRI it was considered that Charlie's muscles have deteriorated to the extent that it is largely irreversible and, were treatment to work, his quality of life would now not be one which we would want for our precious little boy. They both agreed that treatment should have been started sooner.
There is one simple reason for Charlie's muscles deteriorating to the extent they are in now – TIME. A whole lot of wasted time. Had Charlie been given the treatment sooner he would have had the potential to be a normal, healthy little boy.
The parents’ statement goes on for over 2,000 words and is highly recommended reading. It closes with:
Mummy and Daddy love you so much Charlie, we always have and we always will and we are so sorry that we couldn't save you.
Sweet dreams baby. Sleep tight our beautiful little boy.
Charlie Matthew William Gard
Shortly after 11 AM EST (3 PM in London) Thursday, July 27, 2017, it started to be reported by the British press and the media in other countries that Mr. Justice Francis of the UK High Court had given an order for baby Charlie Gard to be moved without further delay from the Great Ormond Street Hospital to a hospice where he will “inevitably” die shortly after. The time of the transfer and the name of the hospice are not being announced in order to maintain the family’s privacy. Charlie's parents, as this article notes, had accepted that Charlie would be moved to a hospice but they wanted him kept on life support there – and had lined up volunteer medical personnel and were willing to pay the costs – for a period of approximately one week so they could have some quiet and private time with their son before they let him go. The judge’s order came after the parents and the hospital had failed to agree on the details of a final plan for Charlie after a deadline of noon British time on July 27, given to them the day before by the judge, had passed.
This latest sad chapter in the lengthy story of Charlie Gard that has consumed Great Britain and been reported widely around the world provides more evidence – as if any is needed – that in the British system of single-payer socialized medicine, the state has the final say over the details of life and death of its citizens, rather than, as in this instance, the parents of a baby.
Peter Barry Chowka is a veteran journalist who writes about national politics, media, popular culture, and health care. His new Web site is AltMedNews.net. Peter's July 13, 2017 one-hour interview on The Hagmann Report can be viewed here